A Family’s Courageous Battle with Alzheimer’s

Walk into a shopping mall. A crowded theater. A sporting event. An amusement park. As your eyes scan the crowd, you are looking at someone – in fact, probably several people – whose lives are forever changed by Alzheimer’s disease. Alzheimer’s is the sixth-leading cause of death in the United States. It is the only cause of death in the top 10 without any way to stop it or even slow it down.

The DeMoe family of Tioga, North Dakota, has the most devastating form of the disease: an inherited genetic mutation that causes the disease in virtually 100 percent of all cases, striking its victims in their 40s, killing them in their 50s. Even more sobering is that a person who has the mutation carries a 50 percent chance of passing it on to their children.

Rather than give up in the face of such news, when the DeMoes learned what was happening to them, they agreed to spend their precious, abbreviated years as part of a worldwide study that seeks to find a successful treatment for Alzheimer’s by 2025. Multiple generations of the family are participating in the study, which is now testing experimental prevention drugs. If successful, these drugs have the potential to avert an international pandemic.

Two members of the DeMoe family will appear at the library event to speak about their experiences. They are Robin McIntyre, 33, and her sister Jessica, 36. Their mother, Lori (DeMoe) McIntyre, died from Alzheimer’s in February 2016 at the age of 57. Before she died, Lori was a key contributor to The Inheritance.

Robin, who now lives in Laramie, Wyoming, learned at the age of 29 that she has the Alzheimer’s mutation. She is currently enrolled in a trial testing an experimental drug designed to prevent the disease.

Jessica, who lives in Denver, Colorado, tested negative for the mutation. She has made a pact with her sister to support her in her fight against Alzheimer’s and raise awareness for the disease that took their mother.

This Health Literacy program is offered by the library as part of the Pennsylvania Library Association’s statewide initiative, PA Forward, to demonstrate that libraries can play an important role in helping citizens manage their own and their family’s well-being, and empower them to be effective partners with their healthcare providers so they can live longer, more productive lives.

Niki Kapsambelis was born and raised in Boston, Massachusetts. She worked for several years as a newswoman for the Associated Press in New England, Los Angeles, and Pittsburgh. Her work has appeared in publications around the world, including The Washington Post, Los Angeles Times, and People magazine. She lives in Mt. Lebanon.